No time for writing.

I have been so busy lately so a blog is well overdue. We’ve had many guests and much going on; no time for writing.

The 20th May saw our 11th wedding anniversary and Jake and I managed to get out for ‘Yo Sushi’ and a film. Having been very out of sorts during the four days preceding, Jake agreed that it was probably a safer idea than a re-run of the previous year which involved much eating, drinking and pool playing. It was the first time we’ve been to the cinema in many years and I luxuriated in a long, forced sit. It was an amazing afternoon/evening but I did find myself morbidly wondering at times where we’ll be at next year.

The big jobs in the garden have been pretty much completed thanks to help from my in laws and from my mum. It is a beautiful place to be and a source of much joy. We can now enjoy an increased ‘pottering’ pace and maybe even get to relax in it a bit.

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It’s all go in the house. All being well, we are off to Ibiza on Friday, and we have made plans for a new kitchen to be fitted while we’re away. It means that we will finally have a dishwasher and a freezer, two appliances that I know will be a big help in the future. It also means that for now we are in internal chaos; the contents of the kitchen, plus the units for the new kitchen, are all piled up in our lounge. Add holiday packing into the mix and chaos abounds.

We are all extremely excited for Ibiza and full of anticipation for an amazing holiday. We have requested airport assistance so hopefully we’ll avoid some of the bigger queues and we plan to hire a mobility scooter for Jake once we’re there. Sutent free for the longest period since treatment began, we are hoping Jake will be feeling as top notch as physically possible. He may even feel like getting a few beers in! He’s feeling very positive about the trip, but there is an emotional edge as this may well be our last abroad holiday as a family (insurance issues), and that’s a tough one to process. But then I’ve been saying for ages that I miss Arisaig and Arran so there’s a silver lining at least.

Finally we have our greenhouse!

This week we managed to install our greenhouse. We’ve wanted one of these since moving here 8 years ago, but never had the perfect spot. Now that the chickens are away we decided to allocate a chunk of their old space to greenhouse; the perfect spot. Finally we have our greenhouse!

Next to the greenhouse lies a big patio area, which up until a couple of weeks ago housed a big trampoline and a mass of garden bits. The slabs were mostly all crumbled due to a design flaw by the previous owners and it looked a real mess. Much of my spare time lately has been used shovelling crumbled slabs and sand away from the patio (thanks for your help Caroline!) and it is now ready for its new lease of life. Watch this space!

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Getting there:

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Jobs like this are essential to keeping us sane and Jake is set on ensuring that the house and garden is just as I need it; he wants my life is as peaceful as possible after he goes. I like big jobs, but when ‘man skills’ are involved (like mixing concrete) I much prefer sharing them with Jake; on my own I’m no where near as confident.

I love my garden and now that Tommy’s more independent I am, for the first time since Joseph was born, actually able to devote chunks of time to its upkeep. I find gardening satisfying and therapeutic and I get great pleasure from harvesting and preserving. Eating is just an added bonus!

Physically, Jake has done pretty well this cycle. We came to an agreement that he would lie in bed longer rather than crash out on the sofa, something that most unreasonably,  has not ceased to irritate me. Since the pills deal with the pain, the biggest issues remain bowel related and sleep related. He has seen a ‘bone consultant’ again and a pelvic operation is still on the cards; the consultant is speaking to fellow collegues and a follow up appointment is scheduled for August.

Am looking forward to a day off tomorrow; my incredibly kind in laws are watching the boys while Sarah James and I indulge in a full day of retail therapy and treats. Good times!

The hardest times.

Today I went on a school trip with the boys. The journey there was by coach, the type of coach we only sit on during the transfer from airport to hotel on a family holiday. All I could think about was the notable absence of Jake and how I may be taking the boys on holiday by myself in the future.

Holidays are supposed to be the highlight of the year, but for those who have suffered a bereavement,  family holidays, much like annual celebrations, must the hardest times. I’m not looking forward to this in the slightest, putting on a brave face for the boys, but crying inside and feeling my heart break more every second.

Mind, why on earth am I worrying about it? I think it’s very unlikely that I’ll afford an abroad holiday when I’m a single mum. That’s a rare headline – Lack of money helps single mum with heartbreak!

Farewell our little lit beacon of hope.

Today is the funeral of a school friend, someone who lived just down my street when I was younger. We were never ‘best’ friends but she was definitely one of the good ones and it shocked me to find out she was so poorly.

Shonagh had cancer tumors in her liver and metastases in her bones. Regardless of her own trials, she had taken the time to be supportive in messages and comments to us, and she really did have a positive outlook; in the early days of our diagnosis she assured us that the shock would subside and that we’d have lots of time left to make memories. This was six months ago; farewell our little lit beacon of hope.

I was shocked to find out she had died as during the last six months she offered advice numerous times, with no indication that things were declining for her. In fact the last thing I knew she was getting on well with her treatment and enjoying much of life;  I find it horrifying how quickly it turned. This stark reality has confirmed what the consultant has already told us, that nobody can say when things will take a turn for the worse; nobody can tell us when we’ll be forced to endure the same.

I feel incredibly sad for all those grieving, and for me, I feel gratitude that we still have time; I know she wouldn’t begrudge my thinking that way. I also feel immensely glad that I now have found a faith in the Bible, something to find comfort in and reassurance for us all that our family does have hope for a solid future, regardless of incurable cancer and death.

Daddy I don’t want you to die.

The past few days have been really good. Jake has been up and about, in good humour, able to do stuff in the garden and play with the boys. I am so pleased that the ‘good week’ has arrived. He’s even had a beer!

Joseph on the other hand seems to be having a worrying time. He’s having frequent nightmares and often mentions the cancer. He’s also quick to cry. We have been very careful with what we’ve told the boys, they certainly don’t know how heartbreakingly serious it is, but we have been trying to prepare them and Joseph’s a smart boy. I think he sees through our gentle preparations; i think he is putting it together himself.

In the car the other evening, he said “Daddy I don’t want you to die. I don’t want you to die because I love you. I love you Daddy.’ I was driving and nearly had to stop. It so tears at my heart.

Making a difference.

Today has been the first day of the school holidays that Jake has been out of bed and able to play with the boys for any length of time. He has been suffering from low blood pressure which makes him feel dizzy and very tired, a side effect perhaps of the Denosumab injection. He had been taking high blood pressure pills so this is a bit of an anomaly; will one counteract the other? I guess time will tell.

What I find discouraging just now is the fact that this is supposed to be ‘good’ time. The last Sunitinib was taken nearly a week ago so his toxicity should be low to negligent,  yet his eyes are still really puffy, his taste is still off, he’s sleeping huge amounts and feeling really quite down in the dumps. I miss him, especially when there’s no school/nursery time to allow me to sit upstairs in the bedroom for any length of time.

Last Saturday, the lovely Patsy Ryan and her partner Calum watched the boys, while we went out for a meal with our friends Fred and Hazel, who we hadn’t seen in a long while. I wore big heels, something I’ve not done in about 5 years! It was a lovely meal, though I’m still getting used to Jake choosing to drink milkshake in preference to beer and choosing to eat lettuce in preference to jalapeños! The boys had such a great time with Patsy and Calum that they went to bed no bother at 8:00 and I was asleep by 9:00 in a wine induced doze, pure luxury!

With a special effort today, we managed to get to Gibside (National Trust),  and took advantage of the mobility scooter hire. It meant that we could do more than just go to the tea room and the boys had a good run about. Yesterday my mum said that she had noticed a reduction in non-cancer linked Facebook posts so i took lots of photos to re-address the balance. The problem is, when one of you is quite obviously not right, the photos are automatically cancer related. Sometimes pictures really catch in my throat and this is one of those; thank you National Trust for providing something that makes such a difference.

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Denosumab.

After a two hour wait for Jake’s Denosumab injection we were ushered to a large treatment room. Full of retired folk sitting attached to drips, it was the most scary room I have been in so far. With a sinking feeling in the pit of my stomach I resigned myself to another long sit. Thankfully, after another 20 minutes, the nurse informed us that it was an injection Jake was to receive after all,  which was, of course, what we had expected.

Jake, being historically a bit of a fainter, felt a little nervous of a) being injected and b) having it administeted in full view of many bored patients looking for a bit of amusement. He was much relieved, after another half hour wait, that the injection was relatively painless.

During the long wait we looked at photos on my phone. Jake asked me if I use a special filter to make me look younger. It was an automatic thing the selfie did, I explained. I took a photo of us both to demonstrate how much better he would look in the photo.

What do you think? I think he looks hilarious!  I look ok but Jake has such an egg head; I laughed with tears for a long time, a sound rarely heard by those walls I imagine.20170405_154215.jpg